Kidney patients in our support group were complaining that their primary care physician hadn’t told them they had kidney disease until stage 3 or 4, so there was little time to make lifestyle changes that could have slowed the progression of the disease. Now it was too late and they were facing dialysis. These patients were not being educated that they were at risk at stages 1 & 2 for kidney disease, nor were they having their kidney function tested. Or if they were tested, many were not given the exact GFR (glomerular filtration rate) result.

Finding patients who want to be proactive in protecting their health should be a positive step for physicians; not giving them the information they need and the tools that can help slow disease progression is unfortunate.

Limited information
In our community, information from the reporting labs would only say, “<60 GFR, normal.” But while a GFR of 60 is “normal” in stage 2, that means a GFR of 59 suggests stage 3 CKD. Nothing was happening in terms of preventive measures until it slipped one point below normal, and patients were not given the exact GFR number until after they reach that stage 3 mark.

Making the change
Blessing Hospital and Blessing Physician Services were open to the making the change from the very beginning, seeing the benefit to patients in the community and the importance of early detection for any disease. The whole process took about seven months, from the initial conversations to the final change being put in place. The key to success was a lot of follow up along the way.

I initially approached Lisa Neisen, director of public relations and communication of Blessing Hospital during a meeting we had to discuss various kidney activities. I then met with Keri Mast, marketing and outreach manager of Blessing Physician Services and also developed some marketing materials to be distributed to the doctor’s offices to raise awareness of kidney disease and the GFR testing.

Another patient and I were invited to a meeting with the Blessing Physicians to present the patients’ concerns.  We were surprised to find out that the physicians didn't’t think that patients needed to know they had kidney disease until stage 3 or 4, because “nothing could be done.” We presented studies and examples of many patients who had found out about kidney disease early who were able to make dietary and lifestyle changes and were able to either slow or stop the progression of the disease. It was also pointed out that the need to test and inform all diabetics and high blood pressure patients about kidney disease was crucial.

With our persuading, the doctors did agree to have the diagnostic laboratories make changes to their reporting style of GFR tests so the patient would now be given an exact number.  This is significant, in that, now the patient can be “proactive” rather than “reactive” in their health choices. The GFR test is included in the cost of the regular blood tests, so fortunately this is no additional cost to anyone. The change took place on March 14, National Kidney Day.

In the past, it has been practiced that there was no need to tell patients before stage 3.  That was definitely a myth.  Ethically, patients should know immediately about ANY disease they may have.  It is their right. If it were cancer, the patient would be told as early as possible in order to make choices, and take proactive steps to battle the condition. If this GFR lab reporting change can be made on a nationwide basis, it is safe to say that more people will find out earlier about their progressive kidney disease. While not all patients will necessarily make positive life choices to change the course of CKD, give them the tools––and encouragement from their primary care physicians ––to make the choice.